Livie's been having a few problems lately, and Tues night she had a really bad episode that just suddenly came on out of no wehre, she couldn't talk, walk or see...she couldn't even function. It brought back all those memories from when we were at Primary's after her brain surgery...she was just like a little vegetable again.
Then her breathing started getting really labored and I couldn't get her to wake up...
I was definitely freaked out because I don't know what brought this on or how to get Livie 'back.' After Livie has seizures, she has a hard time coming back to and functioning normal, but I was right by her and I never saw her have a seizure. And this was far worse than I'd ever seen it before.
I called Livie's pediatriacian and he said to get to the ER ASAP. So off we went, back to the hospital. Livie was comatose/vegatable like (no mobility, shaking, sweating, can't even form a sentance, let alone a word, eyes can't focus and she keeps going in and out with really labored breathing) We kept trying to wake her up, to no avail. The docs were pretty stumped. The only things they could think of were that maybe she had a bad seizure- not like her usual ones and thats why she was having such a hard time (even though I never saw her have a seizure) or she had a drug overdose (from the dosage being too high on her seizure medication), or she had a stroke (she does have a history of blood clots). I'm definitely freaking out at this point. All we can do is wait...
After 7 hours of that Livie all the sudden opens her eyes, looks over at me, smiles and says "Mommy!"
Just like that and she 'woke up.' I know it was only 7 hours, 7 loooong hours, but I sure missed my Livie Bug!!!!
The thought of her staying like that forever....well, lets not even go there.
I was so happy to finally see recognition and awareness on her face! Such sweet relief!
So Livie ended up spening the night and next day at the hosptial. (I'm thinking she missed the awesome ER and 6th floor nurses there at Portneuf. They really are great nurses and so good to her.) I told her she doesn't need to have any more episodes, we'll just stop in as visitors, not patients, and see them instead! Hopefully she agrees to this! (;
No one can figure out why Livie had this big episode. With all the brain truama she has had, its hard to diagnose what causes what. One concern is her seizure medication. She is on a lot higher dose (of trileptal) and too much can actually cause a seizure and problems similar to this. So if anyone has any advice on seizure meds I would love to hear it.
We are happy to be home. Its taken Livie a little while to bounce back, she is still not 100%, the doctor said it might take a few days, but she's getting there (:
Once again I am reminded at how lucky I am that Livie has come out of all this alright.
And for this sweet, little girl in my life!! (:
Jan 22, 2009
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22 comments:
Megan- You are a special mother. More special than you know. Heavenly Father has entrusted you with one of His MOST precious spirits! There is no denying it. Not only is Lyvie a gift to you but God gave you as a gift to Lyvie. A mother who is so strong and faithful through all of the bad. A mother so special that you have God given power to make this special little girls life so full of love and hope. I admire you and hope to become more like you. Keep it up and you and Lyvie will be in my prayers. Sending hugs your way!
Amber
Wow! I am so glad that she is okay! Your are an amazing person to have to have the strength to keep going after all of this!
I'm so sorry that you have to keep dealing with all of this, I really do feel for you both. We love and miss you guys! Come visit!
Oh I hope the doctors can figure out what is wrong. How scary! We will keep you in our prayers.
I am so glad that she came out of it alright. Seven hours would seem like forever in that situation! You are such a good mom, she is so lucky to have you!
Wow Meg, I can't believe how much you guys go through all the time. I am so glad Lyvie is ok. What a scare! She loves you so much and you are such a wonderful and strong mother. I don't know how you do it. I hope she feels better soon.
I honestly don't know how you do it. I would be the biggest mess! You are such a good mom to her. Good luck and hopefully things get better!
sista! glad livvy made through okay.. she always does she is a tough little girl! :) well I bought you a present sure to make you smile! :)
love you lots!
Oh that is so scary! I'm so happy she's o.k. It was really good to see you on Saturday. I felt bad that we didn't even sit close to you guys. Hopefully it was fun for you. Anyway, you looked so cute (as always) we'll have to hang out again sometimes(:
Take care,
Briannia
Wow! I am so glad that she is okay!!! I hope she just keeps getting better!
Megan- I am so glad to hear that she is home. Hope everything continues to improve. You are in our prayers.
You really are one awesome mom! I would be a trainwreck! You should see me when my little girl passes out from holding her breath...I fall apart!
She is adorable!
How scary!! I am so glad she came out of it!! I hope she continues to get better. Lyvie is lucky to have such a wonderful mom who will do what ever it takes to make sure she is alright. We miss you guys.
Holy Smokes, I would have a heart attack if I were you! I cant believe how tough little livie is!! You two are always in our prayers.
That little girl sure likes to keep all of us on our toes! I also hope that Livie agrees to just visiting the hospital...not going in as a patient.
We never know what Heavenly father has in store for us on a day to day basis, I love this quote; "Always live for today because you never know what tomorrow may bring or what it may take away. Kids like Livie are a constant reminder of how precious but fragile life really is. You have great faith and I admire you for keeping it through all of this.
Megan
I'm so sorry that this happened, but I was so excited that I got to see you and Lyvie again. I do, like you, think that next time I want you to just come to peds as a visitor not a patient. I'm so glad I was working though! Good Luck with the Utah thing and keep in touch. You are a beautiful family!!! WE (The whole peds floor Love you two!!!!
I wish I had some advice for you but it seem like we are on the same meds. Coop started on Phenobarb and Keppra then switched to Trileptal. He started being more awake when we switched but he is also a lot more onery. That is so hard not to know what brought that on. Hang in there and we'll keep you guys in our prayers
I never know what to say to you. WOW is all that comes to mind. WOW. I admire you Megan.
I am so glad Livie is ok. Hopefully she can stay strong and stop having these scary episodes. Good Luck!
She just does it when she is hurt or mad. I hear it's pretty common but I hate it...she is so blue and it takes her a little while to get back to normal. It really can't compaire to what you go through, I feel pretty silly talking about it! I hope Lyvie is feeling better! She is such a cute little girl!
I don't know if it offers any insights. We don't really have answers either. We had our baby on Keppra because she was having episodes that we believed were seizures. We'd start the medication and she'd improve. But then suddenly have episodes like you describe. It is VERY scary when they are unresponsive. The nurses would even check her pupils, and they wouldn't dialate. We'd up the keppra again, and she'd do better, then go back into these episodes more intensely and frequently. The difference with us is that we've done EEGs and never seen seizure activity. So we decided to stop the keppra all together. Since we stopped, she hasn't gotten into such an intense episode. She'll still have episodes of lethargy, etc. that no one has figured out. But I do wonder if the keppra wasn't making things worse for her. I do wonder about the dosing on the medication. I wish we had crystal balls and all the answers in the world. It's these unknowns that are the scariest. I am glad it was "only" seven hours, but I do think I understand how seven hours of not knowing can just be a huge nightmare. Keep hanging on...
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